The Impact of Abortion After Prenatal Testing

The Impact of Abortion After Prenatal Testing

Elizabeth Ring-Cassidy and Ian Gentles

In advanced industrial countries, prenatal testing in order to detect fetal abnormalities has become routine. The amount of genetic information that has become available has expanded enormously in the past few years. While there are a number of ways of carrying out these tests, for each of them there is a danger of inaccurate results, and for some of them there is the additional hazard of injury to the fetus.

Selective or genetic abortions are undertaken not because the pregnancy itself is unwanted, but because some fetal attribute discovered through prenatal diagnosis has made the fetus in question unwanted. According to one study, “as many as four out of every 1,000 recognized pregnancies are terminated in the second trimester for fetal abnormality”(1) discovered during prenatal diagnostic testing.

Over the past two decades little emphasis has been placed on the psychological outcome for women who abort a child owing to genetic disorders following prenatal diagnosis. But one significant change within the past ten years has been the growing amount of available genetic information about individual fetuses. This information increases the likelihood that a woman will opt for abortion, perhaps at a late stage in her pregnancy.

Since the early 1980s, amniocentesis has been used to diagnose chromosomal anomalies such as Down’s Syndrome or Tay-Sach’s disease after the sixteenth week of pregnancy. The introduction of ultrasonography has also allowed physicians to identify the presence of neural tube defects (spina bifida). In the mid 1990s, the widespread application of the technique of chorionic villi sampling led to further advances in early detection.

Through prenatal diagnosis it is now possible to detect medical conditions such as cystic fibrosis and late or adult-onset diseases such as Huntington’s Chorea or multiple sclerosis. Further, it is now possible to test for what is known as “genetic susceptibility,” or predisposition, for conditions such as breast cancer or Alzheimer’s disease.

Parents Unprepared for Diagnosis

Pregnant women and their partners are often unprepared for the news that they are carrying a “defective” fetus. An abortion agreed to in haste and under coercive pressure can have devastating consequences, not only for the parents, but for their other children. Is enough being done to inform women about the implications of prenatal testing, and to provide them with alternative choices to abortion when tests prove positive?

There often appears to be dissonance between the practitioner’s understanding of the purpose of prenatal diagnosis and the pregnant woman’s perception of the procedure. While the practitioner may view the diagnostic tests as a way of preventing the birth of a “defective” child, pregnant women seek them out for reassurance that their babies are well and healthy.(2) For many expectant couples, the link between prenatal testing and abortion, at least initially, does not exist.(3)

This may be in part because genetic counselors do not make this link explicit to their clients. In her study of the effects of prenatal diagnosis on the dynamics of pregnancy, Barbara Katz Rothman found that, while genetic counselors might presume that selective abortion would follow the detection of an anomaly, rarely did they offer any information about actual abortion procedures. Indeed, some did not even include a discussion of abortion in the first counseling session.(4) Furthermore, they do not provide information favorable to children with special needs.

Even when birth defects and abortions are explicitly discussed, couples seem to “deny this possibility, and when faced with the reality, react as though they were hearing for the first time that birth defects can occur.”(5) The pregnant woman and her partner often simply do not link this outcome to prenatal diagnosis.

Sequelae of Genetic Termination of Pregnancy

Despite the shock and grief they may experience upon hearing the news of a fetal anomaly, the pregnant woman and her partner are usually urged to make the decision to terminate quickly.(6) Behind this urgency is the physician’s desire to avoid complications of “late” terminations of pregnancy.

Because of the delays involved in amniocentesis, abortions may occur in the second and even third trimesters of pregnancy. In health care settings, the issue of such late abortions has raised ethical and legal questions.(7) In one early study, most of the terminations occurred within 72 hours of the woman receiving the news of the abnormality.(8) This hardly allows enough time for the couple to become informed about parenting children born with that anomaly and thus consider carrying on with the pregnancy.

While couples may not be completely aware of the physical aspects of genetic abortions, they usually know even less about the accompanying and subsequent psychological and emotional distress of the procedure.(9) In interviews conducted by two research teams, all of the study subjects found the pregnancy termination to be a traumatic experience.(10)

“Terminating a pregnancy because of a major fetal malformation is often a shattering experience, and time for adjustment may be prolonged.”(11) This is true for both “early” as well as “late” genetic abortions.(12) Indeed, there may be instances in which an early abortion may present more difficulties than a later abortion. One study subject reported this to be so because “there was no fetus to see and hold” after an early termination.(13) “It is possible that the ‘privacy’ of first trimester prenatal diagnosis and selective [genetic] abortion may actually increase the unresolved ‘disenfranchised’ grief since so few people know about the person’s loss.”(14)

Researchers offer various explanations for this phenomenon. In almost all cases, pregnancies terminated for genetic anomalies were pregnancies in which maternal attachment had begun,(15) even as women may have hoped to avoid such attachment.(16) Many of the women choosing or urged to undergo prenatal diagnosis were older and, as some authors speculate, the pregnancy may have been seen to be one of a declining number of opportunities to have a child.(17) As well, unlike a miscarriage, a genetic termination occurs because the woman chooses or consents to it. According to one study, “genetic abortions are especially poignant because the parents take an active part in the baby’s death.”(18)

Other researchers speculate that “perhaps the role of decision making and the responsibility associated with selective abortion explains [sic] the more serious depression following [the abortion].”(19) Whatever the reason,”prospective parents are rarely prepared . . . for the extent of the psychological trauma experienced after a selective [genetic] abortion.”(20)

Grief, Guilt, Depression

The extent and intensity of grief can be a surprise to many couples.(21) Nearly half of the women in one study had symptoms of grief six months after the abortion and almost one third continued to grieve thirteen months after the termination.(22) “The loss of a fetus can cause intense grief reactions, often commensurate with those experienced over the loss of a spouse, parent, or a child.”(23)

Neither the method of termination nor the type of anomaly seems to have affected the intensity of grief, and women grieved abortions following both chronic villi sampling and amniocentesis.(24) With abortions after ultrasound and maternal serum alpha fetoprotein testing, there was “more confusion, numbness and subsequently more prolonged grief reactions. . . .” This suggests that, with these “relatively non-invasive procedures . . . less thought is usually given by the women to preparation for an abnormal finding.”(25)

Following genetic termination of pregnancy, women endure the normal but difficult symptoms of grief, such as psychosomatic disturbances, guilt and anger, as well as the symptoms characteristic of an abruptly ended pregnancy in which the fetus dies–distress upon seeing pregnant women or newborn babies, continuing to feel pregnant, and experiencing more pronounced stress around the due date and anniversaries.(26) Recovery can take a very long time(27) and, because of the nature of genetic abortions, the grief may be accompanied or complicated by other factors.

Guilt and shame are often experienced after a genetic abortion. In one study, this was the case for one-third of subjects.(28) In another, researchers found that, more than a year after the abortion, 31 percent of the women who had terminated their pregnancies for fetal indications continued to feel guilt and anger.(29)

The guilt and shame may be two-pronged. On the one hand there is a sense of failure elicited by the fact of the fetal anomaly. Parents may feel that they are to blame for their child’s imperfection.(30) Sixty-one percent of women and 32 percent of men felt this way in one study.(31) In another study, 43 percent of the women suffered from this sense of guilt.(32)

On the other hand, there is the guilt generated by having made the decision to terminate the pregnancy.(33) In one study, “forty percent of the women and nine percent of the men” felt this way.(34) Many women are reluctant to admit that they have had a genetic abortion and will tell relatives and friends that they had suffered a miscarriage instead.(35)

A very common form of psychological disturbance following a genetic abortion is depression.(36) Taking into account some study subjects’ strong denial of feelings, “the actual incidence of depression following selective abortion may be as high as 92 percent among women and as high as 82 percent among the men studied.”(37)

In another study, researchers found that, six months after the abortion, almost half of the subjects suffered from depression and anxiety and that ten of 48 women were receiving psychiatric treatment.(38) The researchers concluded that it was not the case that women were simply relieved not to be giving birth to or raising a child with an anomaly.(39) “Women undergoing termination of a planned or wanted pregnancy after prenatal diagnosis constitute a high risk group, vulnerable to depression and social disruption.”(40)

Planned vs. Unplanned Pregnancies

The assumption of many researchers is that genetic abortions are the terminations of planned or “wanted” pregnancies.(41) In this respect, researchers contend that genetic abortions differ from elective terminations of pregnancy.(42) Further, the assumption of many researchers is that the grief and depression that often follow genetic abortions occur precisely because the pregnancy was planned and “wanted.”(43) In many cases, maternal attachment may even have begun.(44) Thus researchers have compared genetic abortions to miscarriages and stillbirths insofar as they evoke grief and depression arising from the loss of an anticipated and hoped-for baby.(45)

The sequelae following genetic terminations of pregnancy may not be so easily explained, however. Research indicates, first, that not every pregnancy terminated because of fetal indications is a “wanted” or planned pregnancy. In one study, 23 percent of pregnancies aborted for genetic reasons were unplanned; in another, 27 percent of the aborted pregnancies were unplanned. As well, two percent of women remained “ambiguous” about their pregnancies in the latter study.(46)

Second, and more importantly, research indicates that grief and depression are not confined to the termination of planned and “wanted” pregnancies.(47) The “ambiguous” women “felt very guilty about the intervention two years after the event.”(48) There is a clear link between depression and the abortion of “unintended” pregnancies.(49)

There have also been links found between grieving and elective abortions, not normally considered to be terminations of “wanted” pregnancies.(50) While grief and depression often follow genetic terminations of pregnancy, it is a mistake to attribute this reaction solely and simply to the “wantedness” of the pregnancy.

Living Children

The decision to abort for genetic reasons can have a negative impact on living children. Although it is not often considered a factor in the initial decision-making process, the abortion of a sibling can have emotional consequences for children in a family. Children are affected by the anxiety of parents over the abortion and react to the absence of the baby (whose presence they will have been aware of from the third or fourth month of pregnancy).

Even very young children react to their parents’ distress and may have difficulty understanding and coping with the outcome.(51) In the presence of prenatal life, young children do not separate the concept of “fetus” from the concept of “baby.” The conceptual difference between the two is a medical and social construct of adults and is not easily understood by children whose approach to the world is concrete.

In one study, couples adopted one of three approaches in explaining the abortion to their children. The first was a partial explanation that avoided discussing the role of their own choice. The children who received such an explanation expressed sadness, disappointment, and guilt, and one child wrote an essay on the event as the worst thing that had ever happened to him.

Parents of very young children chose to give no explanation and yet observed behavioral changes such as motor regression in their children. Those parents who chose the third option–to give a complete explanation–did not find that it solved the problem. Rather, they reported marked and disturbing reactions.

One researcher reports that “abortion can produce a deep, subtle (and often permanent) fracture of the trusting relationship that once existed between a child and parent.”(52) A number of “post-abortion survivor syndromes” have been identified, showing that “there are terrible conflicts that arise from these situations, and these have an impact on the individual and society.”(53)

Public Opinion vs. Medical Opinion

At present, in the general population, there appears to be a gap between acceptance of testing for disorders and acceptance of abortion of the affected fetus. When a similar group of Canadian adolescents was presented with already completed prenatal test results, it was found that “females are consistently more opposed to abortion than are males and both sexes show a considerable opposition to abortion in absolute terms.”(54)

Other researchers note that “health professionals hold more positive attitudes towards termination of pregnancy for fetal abnormality than do lay groups.”(55) Under the present circumstances, this could lead to “stimulating a demand for services” rather than responding to a perceived need.

Prenatal diagnosis, already accepted as part of obstetrical care, is expanding to include many conditions, disorders, and personality traits. With these new opportunities for aborting affected pregnancies come issues about informed consent and possible social coercion to abort.

If women choose to abort as a result of medical pressure then the decision will be conflicted and a violation of their personal autonomy. One researcher asks: “Does genetic testing of a foetus empower women or pose an unanticipated threat to autonomy? To address these issues there is a need to articulate a feminist perspective on genetic testing and possibly to legislate protection for women’s rights during prenatal care.”(56)

Furthermore, there is a negative presumption in the medical milieu regarding children with these conditions. There is an imbalance of information, with little provided that is favorable to children with special needs.

Conclusion

Prenatal testing is expanding rapidly, as ever more genetic markers are discovered and women are urged to undergo these tests. It seems that there can be enormous pressures applied to mothers to go through with terminations if an anomaly is found.(57)

Couples are not prepared for the depression and guilt that frequently ensue. Nor are they usually informed about the help that is available for raising children with special needs. For an informed choice to be truly available pregnant women and their partners need to be told about the possible impact of abortion on them and their other children, and they also need to have information about the care of children with special needs.

10. White-Van Mourik MCA, Connor JM, Ferguson-Smith MA. The psychological sequelae of a second trimester termination of pregnancy for fetal abnormality over a two year period. Birth Defects: Original Articles Series 1992;28:61-74, p. 71.

25. White-Van Mourik MCA, Connor JM, Ferguson-Smith MA. The psychological sequelae of a second trimester termination of pregnancy for fetal abnormality over a two year period. Birth Defects: Original Articles Series 1992;28:61-74, p. 72.

30. Blumberg BD, Golbus MS, Hanson KH. The psychological sequelae of abortion performed for a genetic indication. American Journal of Obstetrics and Gynecology 1975;122:799-808, p. 806.

31. White-Van Mourik MCA, Connor JM, Ferguson-Smith MA. The psychological sequelae of a second trimester termination of pregnancy for fetal abnormality over a two year period. Birth Defects: Original Articles Series 1992;28:61-74, pp. 69-70.

34. White-Van Mourik MCA, Connor JM, Ferguson-Smith MA. The psychological sequelae of a second trimester termination of pregnancy for fetal abnormality over a two year period. Birth Defects: Original Articles Series 1992;28:61-74, p. 70.

48. White-Van Mourik MCA, Connor JM, Ferguson-Smith MA. The psychological sequelae of a second trimester termination of pregnancy for fetal abnormality over a two year period. Birth Defects: Original Articles Series 1992;28:61-74, p. 63.

49. Reardon DC, Cougle JR. Depression and unintended pregnancy in the National Longitudinal Survey of Youth: a cohort study. British Medical Journal 2002 January 19; 324:151-152.